Wednesday, July 8, 2015

Look Ma, No Hands

I have been diagnosed as Autoimmune for nearly 20 years now. And I am used to it. I can even accept it on most days. I mean it’s not going away anytime soon so there’s no point in continuing to be upset by news I was given two decades ago. But that doesn’t change the fact that I don’t always like it.

When I was first diagnosed, it was simply a label I was given. It was a pain in my wrists-literally. That was it. My life wasn’t really affected by my disease and I had no reason back then to think it would be. I had been lucky. I caught it early. And I was being given all the tools I needed to control it. Or so I thought.

I was officially diagnosed four months after my second child was born. I was a stay at home mom so my schedule was my own. I played on the floor with my kids or sat outside with them as long as I was out of the sun. I took them for walks and to the park. And when I got tired, I napped on the floor with them in the playroom. They were young yet, and active. And I was keeping up. For the most part.

When they were both finally in school full time, I went back to work. Why wouldn’t I? I had just spent eight years at home raising active boy children with no real major problems. But in the real world, things were different. The simplest of actions to most people proved to be a huge problem for me. I could not get up out of my chair easily. Yup. Simply standing up to walk around. I didn’t have to do it all that much at home. We had a small house with an enclosed yard, porch, and playroom. But now I was up and down all the time.

And walking wasn’t so easy either. I had always had a stroller to hang on to. I didn’t know how much my hips and knees were actually being affected. I didn’t know that this Sjogren’s was stealing my balance. At first it was the occasional mis-step sideways. Or the minor slip on ice or a wet floor that was totally recoverable. No big deal.

But soon mis-steps became stumbles and slips became windmill like tilts. Still totally recoverable. I had taken 10 years of ballet after all. But more and more I was having these little incidents. And then the tripping started. I could trip over a dust bunny. And I couldn’t always recover. I fell. And I became afraid. Falling meant injuries and I got injured. A lot. I fell onto my knees so many times that I lost count. Finally, I cracked a knee cap when I fell down the stairs.

Now, I am terrified of falling. I am terrified going down the stairs. My knees crackle like my morning cereal. And one of my knees is always swollen. Always. I don’t go out much without a cane now. At least I’m not supposed to. I am stubborn and still more than a little vain. When I said I have accepted my disease I was being truthful. I just don’t like looking like I have a disease. But which is worse-limping or using a cane; even if it is a totally cool custom made cane with autographs all over it?

So at this point in my progression, my definition of a good day is one where I can get through the day without tripping, side stepping, crashing into a wall, or tilting as if I am being pushed over by a huge invisible cursor. A good day is a day with no cane and no falls. But a great day? A great day is all of the above with no pain. And maybe taking the dog for a walk around the block!

About Me

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. I have raised my kids, worked at my career for over 30 years, and have been a wife to her husband of 26 years while being diagnosed with an autoimmune disease for 21 of them. I currently writes from the heart about these experiences while wrangling our one rescue dog and three rescue cats.